and are better than anything that can ever happen to one again.”
--Willa Cather, My Antonio
My CLL diagnosis has, among other things, made me aware of mortality in a way that I was not before. I used to live in one realm, the everyday, mundane world where the sun always rises. But now I also live in another, a realm in which I know that one day I will not live to see it set.
Sometimes I wonder: Is this a curse, or a blessing, or both?
My wife, Marilyn, says the body is like a ticking time bomb, that everything seems OK until it goes off. In good health, life seems endless. Death is a vague intellectual concept, not a visceral reality. It’s hardly a concern at all, really.
Perhaps we humans are hard-wired not to think about our demise; perhaps Western society, with its endless fascination for youth and progress, does not like to consider that those entertaining features will come, for every last one of us, to a screeching halt.
But when that time bomb goes off, one must live, at least on occasion, outside the comfort zone that most of us spend a lifetime building. Even with cancer we still live mostly in the mundane world, attending to our daily doings, but we are sometimes forced out of that coccoon into a fearsome new place.
This new realm is awesome, in the traditional sense of the word; we enter it with gaping jaws, dumbstruck in the presence of the mysteries of life and death. So long as we live we cannot completely know these mysteries, but in this realm we accept their palpable presence and our connection to them. Sometimes we enter this realm with a thought, or a passing emotion, or a memory, or after hearing some bad medical news. Sometimes it steals upon us like a breeze, and then passes. If you are living every day with leukemia, it is never far away.
In this realm one can sense the eternal cycle of creation, shrouded in a cloak of uncertainty, promising us just one thing for sure: the loss of the world we have known. It is the realm where our greatest fears must be faced as rites of passage. And yet, this is the place of our most profound hope: To live after, to be connected again to those we love. For lack of a better term, and to differentiate it from the everyday world, I call it the Realm of Life and Death.
When one of those bodily time bombs explodes, it can shake up the world of loved ones, too. This is especially true where the bond of love is deep, as with Marilyn and me. Now she must learn to live without taking anything for granted except that the harrowing second realm is close by.
As with many cancer patients, my diagnosis came like a tornado, picking up everything in its path. In the beginning, both of our energies were sucked into the dark cloud, and our focus become what to do, how to cope. This can become the normal state of affairs after awhile, a new reality in which the patient’s progress becomes the marker by which a family unit measures time. CLL becomes the sun around which the planets rotate.
And yet, we patients need to guard against becoming self-centered, or allowing the center of attention to drift too much toward our own needs and away from those of our loved ones. For I have come to know in the Realm of Life and Death that Marilyn, too, will one day wake and not live to see the setting sun.
This was driven home to me recently as I sat in the waiting room of a doctor’s office for more than two hours while a an emergency colonoscopy was performed on the love of my life. When it came to care, the shoe was now on the other foot, and I was reminded of what it is like for Marilyn to cope with my CLL: the anxiety, the fear, the mix of tears and prayers, the challenge of holding it together enough to think rationally in a world that has suddenly become arational.
For several days Marilyn had had severe abdominal cramping, along with a number of other nasty symptoms, which only seemed to be getting worse. The office of our primary care doctor insisted that she see the nurse practitioner, since the Great Man Himself was booked solid for two weeks. This nurse practitioner is a nice person, but her level of skill as it applies to any given condition is not unlike that which one can acquire in an hour of searching the internet.
So I fired our doctor and found another, who has an interest in gastroenterology and agreed, after hearing about the symptoms, to see Marilyn that very day. After he saw her, he scheduled a colonoscopy for the next afternoon.
And so I found myself in the waiting room, hoping that whatever it is is easily fixable, not really serious, nothing that will blindside us like my leukemia did. After a cancer diagnosis, one can never again count on all being well. The body is a time bomb, the immutable truth of the second realm awaits.
I sit in the waiting room writing these notes as the colonoscopy drags on; in the corner a TV attached to the wall lords over the array of chairs, blasting forth a fluffy talk show that entertains, and perhaps sometimes annoys, its captive audience.
I look up when there is a segment about pets who look like celebrities. People sent in pictures for this. “She thinks her dog ‘Poochie’ looks like Jack Nicholson!,” giggles the host. I watch, I smile. Some of them are pretty dead on. I sit there, one foot in the breezy, mundane realm of laughter and forgetting, one foot in the Realm of Life and Death.
Soon I am back to finding nothing to smile about, for it is in some ways harder to be the mate of the sick person than to be the sick person. The threat of loss -- of an end to everything that makes life a joy, and to be left with nothing but the memories of what was, with no prosepct of having such joy again in this life -- is more fearsome than death itself.
If I die of CLL, leaving Marilyn behind, I go from one journey to the next (perhaps), leaving her to live what could only be described as a purgatory on Earth, in which half of her is missing. It would be easier, I think, to be the one who passes on.
Out of love for her, I do not want to leave her in this condition. I remember having a nightmare once, about ten years ago, when Marilyn had another medical problem that at first appeared extremely serious: I was alone, in a spacesuit, floating eternally and aimlessly in the black space between the stars. It brought with it a gnawing feeling of despair and loneliness that I will never forget.
And so this is a powerful force in my life, to live for her, to spare her a long purgatory, to stay alive for us, and to continue to enjoy our life together. This is a drive, subconscious and unconscious and superconscious, of such significance that I have no doubt that it will help prolong my life.
But I know, perhaps, that this will only put off the inevitable. One day, one of us may go before the other. If it happens when we are old, it might be just a little easier, for the time in purgatory would be shorter, the day of reunion -- or the bliss of forgetting -- closer. If it happens sooner, it will be that much harder, bringing with it the prospect of unbearable and prolonged pain.
There was a German composer named Louis Spohr, who lived from the time of Beethoven through that of Schumann. He dearly loved his wife, Dorette, and his early works, written in the atmosphere of their completeness and love, were touched with the genius of the great composers. At Beethoven’s death, he was considered to be the next great man of music. And then, unexpectedly, his beloved mate died, and his inspiration, his very abilities, began to lessen. He recognized this and wrote about it in his autobiography. Here was a man who, in the flower of love, made music; without it, he could do no more than assemble notes.
Not that this is true for everyone. Beethoven never married and wrote great music to the end. But for some souls, who thrive on love, the death of a mate is the same as removing the cosmic feeding tube, the very nourishment of life.
I wondered today, holding Marilyn’s hand in the waiting room as she nervously awaited her colonoscopy, what was my lesson in this life? There are those who believe in reincarnation, and who posit that we are sent back to life to learn what we failed to learn before. Accepting this as a fact (for the moment, at least), what lesson did the powers-that-be want to teach me?
This has always mystified me, for while I have learned lessons about this and that, I never saw an overarching theme.
Until today, tears welling up, I realized: To know what love is.
I have come to know it by its absence, when I was very young and my parents broke up at exactly the wrong time in my life. By abandonment and fear and loneliness I have missed love profoundly. As an adult, I have come to know it by its fullness, by its tenderness and acceptance and by its remarkable depth.
Marilyn and I used to joke that we would both die together, sometime in our eighties, in a car accident. It was our way of not thinking about life without the other, of accepting that our journey is, from here on out, made together.
But what if there is no accident? What if one of us does die first? Marilyn recently said she sees no purpose in dwelling on the matter, nothing to be gained from it. I think she is right.
It is enough to wake each day and put one foot in front of the other, hand in hand. And from the vantage point of the Realm of Life and Death, to appreciate the beauty of the act, the faith it represents, and the joy it sustains.
Epilogue: We were granted a reprieve. The colonoscopy turned out OK, and showed nothing cancerous or life-threatening.
The photo above dates from ten years ago, the year I had a blood test that showed an elevated white count, and which I now suspect was the beginning of my CLL. The time bomb was going off, quietly.